Because Life with Still's Can Still Be Life

Methotrexate belongs to a group of drugs called Disease Modifying Anti-rheumatic Drugs or DMARDs; this means that they control the mechanisms behind the disease process rather than just the presenting symptoms, usually by suppessing the body’s immune response; as such they are almost always Immuno-suppressant drugs and often Cytotoxic. Their main aim is to stop/slow down the disease process and prevent further damage to joints and other organs involved.

Methotrexate works by preventing the multiplication of over-active cells; in rheumatoid arthritis and Still’s Disease, it suppresses the excessive activity of the immune system, reducing the number of cells that cause inflammation.

It is available as a tablet in two strengths – 2.5mg and 10mg – and is usually taken one day a week, with Folic Acid on other days, as prescribed. It is also available as an injection, for those that cannot tolerate the oral form and suffer from excessive side effects.

You can not take Methotrexate if you are pregnant or plan on becoming pregnant during treatment. Methotrexate is a cytotoxic drug that is sometimes used to induce early abortions. It is classed by the FDA as a ‘Pregnancy Category X’, since it is ‘terotogenic’ and can cause serious birth defects as well as miscarriage. The same applies for a man wishing to father a child. There should be a stoppage time of at least 3-4 months before attempting to conceive.

You may not be able to take Methotrexate if you have a serious infection, have kidney or liver disease, if you have a stomach ulcer or if you have certain blood disorders. While taking Methotrexate, you should not receive any live vaccines and should consult your doctor before any other vaccinations. If you require an operation or dental work etc, you should always inform them you are taking Methotrexate as they may request you stop this for a short time to minimise infection risk.

Side Effects can include:

Nausea and vomting

Diarrhoea

Sore mouth and ulcers

Headache

Dizziness

Extreme tiredness and fatigue

Hair Loss

Menstrual Irregularities

Changes in Liver function

Reduced resistance to infection

You will be given an information leaflet if prescribed this drug; always refer to that and seek medical advice if you experience other, significant side effects, including: sore throat, darkened urine, chest pain, breathlessness or unusual bruising. Of course, like all drugs, there is also a risk of allergic reaction and so you should see a doctor immediately if you eperience any of the following: Shortness of breath, swelling of the mouth or face, severe skin rash.

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During treatment with Methotrexate you will require regular blood tests to monitor various things, including Liver function. Your doctor will prescribe you Folic Acid to take on days that you are not taking the Methotrexate, to ensure Folate and B12 levels don’t drop and to minimise side effects. Some other things you can try to limit unpleasant effects are:

Drink plenty of water, especially on the days around taking your dose of Methotrexate. This is also important if you do experience vomiting and/or diarrhoea.

Eat little and often, but always take Methotrexate on a full stomach.

Take your dose of Methotrexate in the evening, to limit side effects and disruption to your day.

Get and extra hour or two sleep on the days before and after your dose, to reserve your energy levels.

Brush your teeth with a soft toothbrush and use a medicated mouthwash, such as Oraldene, to prevent and/or treat sore mouth and ulcers.

Avoid enclosed public places and people who you know are sick, to minimise infection risk.

Keep up with blood monitoring to ensure no serious impact on your body is missed.

Avoid Alcohol to reduce the risk of Liver damage.

Always, always use contraception if sexually active.

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Personal Experience: The first time I was prescribed Metotrexate was at the age of 15/16, when my diagnosis was still Dermatomyositis. It was the first DMARD my paediatric rheumatologist tried, after a short sharp boost of steroids failed to send things into remission and we realised I was in this for the long haul. I took 15mg on Fridays and another 15mg on Saturdays, which was the maximum dose for my age; taking it at the weekend was supposed to allow me to go to college during the week without the ‘hangover’ effects you get from taking Methotrexate.

I remember I always felt ill on this drug, I didn’t have much of an appetite, was sick a lot, lost a lot of weight, suffered extremely painful, heavy menstrual periods and my skin turned greyish due to anaemia; but, for a long time, I escaped the harsher side effects, with my fortnightly monitoring always clear. However, for the four years I was on Methotrexate, we never really noticed any improvement in my condition and I was having joint aspirations/cortisone shots every 4-5 weeks throughout.

After four years, the Methotrexate was discontinued when I was transferred to my current Rheumy and suffering the effects of the drug and of the Still’s Disease – by this time I couldn’t keep any food down, my hair was falling out and I had Liver and Kidney failure/damage. Needless to say, I was glad to see the back of it.

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I was prescribed Methotrexate again in June 2011, alongside my Orencia infusions. This was more to boost the mechanism of the drug and to prevent my body from creating antibodies against it, rather than as a treatment in itself. I currently take 15mg once a week, which leaves me feeling quite tired and sickly for a couple of days, although this decreased over time; I’ve also noticed that my menstrual period is getting heavier and more painful. My Liver function tests have so far been normal.

I was very hesitant to restart this drug and if I was ever offered a suitable alternative, would switch to it in a heartbeat. However, it does help many, many people so I don’t want to demonize it too much.

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I have been on MTX since Jan 05 and have never had a break from it. The max dose I’ve been on is 15mg and the lowest was 7.5mg. Am currently only on 10mg despite being mid flare because I’m convinced that taking any more makes me feel worse (synovitis, rashes, fatigue and fevers all seem intensified at least for the 48 hrs after I take it). My rheumy doesn’t believe that this is a sensible reason to stop it and particularly now that I am on anti TNF I will continue with my small dose. Other than generally finding it revolting to swallow I’ve been lucky not to suffer any other side effects so shouldn’t really complain!

Thanks for posting this information. It’s very helpful, and much less frightening than some of what I read on the west of the internet.

I just started Methotrexate last week to treat a full body flare up of Psoriasis that I just have not been able to get under control. I’m on 7.5 mg a week, and so far, I’ve only had one really bad day (the third day). I ate too much before taking my medicine, and then took it almost immediately afterwards. Very bad choice. Other than that, I’ve had the kind of side effects that just make you feel like you have a bug: nausea, sore throat, headaches, chills (or the feeling of being cold, but hey it is January), sore muscles…all the fun stuff. But, I find that if I just pace myself, I’m okay. I’m hoping that the side effects will become less evident after a few more days, as I learn how to take it.

I’m taking tons of folic acid and a ridiculous amount of vitamins. I’m also taking a “noni/acai/mangosteen” supplement that’s supposed to help my liver and kidney function. I’m super paranoid, since I take several other medicines.

My Still’s Life

My name is Laura and I was diagnosed with Still's Disease at the age of 19, with previous diagnoses of Dermatomyositis at 14 and Post-Viral Reactive Arthritis at the age of 3. Life is a bit of a rollercoaster to say the least, but I'm happy to say that I have had my fair share of highs with the lows. I have currently been off work for over 18 months due to a severe flareup and was getting bored, so I thought that I would try and put my mind to something constructive.

I have tried numerous drugs to treat my Still's over the years, including:

Unfortunately, having one autoimmune disease can lead to other health problems and I have also developed Hidradenitis Suppurativa, Gastritis, Anaemia of Chronic Disease, MVP, PCOS and Migraine, which I post about from time to time.

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Toughness is in the soul and spirit, not in muscles.

~Alex Karras

The block of granite which was an obstacle in the pathway of the weak, became a stepping-stone in the pathway of the strong

~ Thomas Carlyle

Strength does not come from physical capacity. It comes from an indomitable will.

~ Mahatma Gandhi

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'